Bre Curtis, Picture You Photography
Auni Naulu was diagnosed earlier this year with SMA, a genetic disease, but this diagnosis has not stopped her family from seeing the good in the world.
If you have spent time in Spanish Fork recently, you have likely heard the phrase, “Anything For Auni.” But it’s not just something the Spanish Fork community says, it’s something it does.
This Saturday a 5K will be held to raise money for Auni Naulu's medical costs with events from golf tournaments to breakfasts to yard sales to bracelet sales. This community has proven it will do anything for Auni.
“There are seriously no words to describe the outpouring of love that we have received,” Caitlin Naulu, Auni’s mom, said. “It is absolutely insane to me just how great people are and how a community can come together.”
Auni Naulu was born in December 2013, as what seemed to be a beautiful and healthy little girl with dark eyes and dark hair. But Auni has a disease called spinal muscular atrophy (SMA) which, according to curesma.org, “is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to sit, crawl, walk, eat or breathe.” While it only affects approximately one in 10,000 babies, it is the leading genetic cause of infant deaths.
According to the Naulus' blog, while there is currently no cure, recent medical discoveries have extended the life expectancy of children with SMA from two years to four or five years. Because Auni is still so young, she has yet to experience the more serious effects of the disease but has already experienced physical limitations.
“There have been little moments where I know she really wants to do something,” Caitlin said. “I can tell she wants to so bad but she just can’t quite do it. So it just tugs at your heart because you know she wants to. That’s one thing with SMA is that her brain development is totally fine so she’ll develop normally but as time goes by she’ll probably understand more and more. She’ll realize that she can’t do things that other kids her age can do.”
Though watching their baby struggle is heart-wrenching, Auni’s parents wouldn't trade this time with her for anything.
“She’s an amazing spirit all the way through,” Caitlin said. “She’s so content and happy. She has brought so much joy to our lives.”
The Naulus have accepted that this is something they were meant to experience. One could even say that they have been prepared to face this trial. Caitlin, who is a special education major, grew up with a sister with special needs with many of the same physical limitations Auni has or will experience, such as being fed through a feeding tube and having a suction machine.
Caitlin says that their faith has played a powerful role in supporting them. As members of The Church of Jesus Christ of Latter-day Saints, the Naulus believe that they can be with their little girl forever.
“We’ll just raise her as much as we can in this life, and whatever else, we’ll do in the next,” Caitlin explained. “We lean on our belief of eternal families a ton and that brings a lot of comfort because we know the happiness to come. This isn’t the end.”
While many may view this as a negative experience, the Naulus have instead been overwhelmed by the goodness they have found in the world around them since Auni’s diagnosis.
“In today’s world we hear about all of the scary and bad or the hardships going on and not as much about the good,” Caitlin said. “Something like this initially seems so difficult and so hard, but the good that can come from it and the people that have reached out
their kindness and generosity has blown us away. Most of our tears are happy tears of gratitude and disbelief over how amazing people are.”
Anything for Auni 5K
When: Oct. 25 at 9 a.m.; Registration begins at 8 a.m.
Where: Spanish Fork High School — 99 N. 300 West, Spanish Fork
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T-shirt and breakfast will be provided by Magelby’s Fresh and is included in the cost of registration.
Proceeds will go toward covering Auni’s medical costs. Donations can also be made on the family's Go Fund Me account.